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ATAC
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I have suffered for about 5 years, and have been unable to find a doctor that will both recognize that I have cluster headaches and be able to treat it at all! After trying everything under the sun (like i'm sure many of you have) I have come up with a way that does usually stop a headache once it has begun. Because my headaches are not exactly typical cluster headaches (they do share MANY of the symptoms though), this may not be effective for many of you. If I do not do this, my headache grows to be something worth screaming and thrashing about. here's my trick:
As soon as I get a headache (it doesn't usually work as well if I have had the headache for more than a couple of minutes) I wrap a piece of ice in a handkerchief (run it under a little bit of water to get that section of the handkerchief wet so that you actually feel cold on your head) and place it directly on the most prominant spot that hurts. I then start counting. The pain gets to be almost untolerable, however most of the time this only lasts for a couple of minutes (The most I have ever counted to is 200). This pain then subsides and my head gets numb for a bit. If I keep the ice in the same place and don't move it throughout the entire process, the headache will usually go away completely and stay away (at least until the next one, which is usually several hours later).
As I said, the pain is almost intolerable when the ice is on my head, but it is important not to move it. when I move it before the pain has gone away completely, the headache always comes back immediately.
I hope this helps somebody out there, and I would love to hear if this method works for somebody that has more typical cluster headaches than I.
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E-Double
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Re: Ice
« Reply #1 on: Aug 23rd, 2005, 1:45pm » |
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Many of us use ice in this manner 
You say that you have been unable ot get a diagnosis and that many of your symptoms are that of CH but that there are differing.
How do they differ?
There are some other HA types that resemble CH but differ in duration and that are near 100% responsive to different meds.
Hook us up wioth some additional info and maybe we can share 
good luck!
E
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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ATAC
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Re: Ice
« Reply #2 on: Aug 23rd, 2005, 2:27pm » |
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I'm glad to here that this is a well known thing.
My headaches are typical of ch in that they are one sided and although for bad headaches they spread to my jaw and teeth, the pain is right above my eye, they last 1/2 hour to 1 1/2 hours, they often wake me up at night or I get them when I first wake up in the morning. They are very sensitive to alcohol (usually when I'm in a "cluster", but sometimes when I drink alcohol not in a cluster, it seems to start a cluster). And they are usually VERY painful. they often accompany a stuffy nose of the affected side, as well. however, when I went to a neurologist, he refused to agree that they were ch for several reasons:
1) because i was a girl (and that is why i instantly did not agree with him, and disliked him from that point on)
2) because the headaches were in no particular pattern (although I have since realized that I do have periods were I do not get headaches, usually this doesn't mean that the headaches stop altogether, they are just far reduced in degree and number)
3) they do not cause pupil dilation or droopy eyes
4) they do not increase my blood pressure
Obviously, I disagreed with him and searched for somebody else that could help me.
I live in west virginia, and have seen several doctors, who I can suggest cluster headaches to and they will agree with me, but they do not know anything about treating them, and so have left me medication free and frustrated with the medical system.
Because i'm not that interested in taking medications (unless I am currently having an attack, and then I will do ANYTHING to get rid of the pain), I have searched for other ways to deal with it. Ice has been a life saver for me, although if there were something that I could do that would rid my life of the problem I would probably do it.
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E-Double
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Re: Ice
« Reply #3 on: Aug 23rd, 2005, 2:41pm » |
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on Aug 23rd, 2005, 2:27pm, ATAC wrote:I'm glad to here that this is a well known thing.
My headaches are typical of ch in that they are one sided and although for bad headaches they spread to my jaw and teeth, the pain is right above my eye, they last 1/2 hour to 1 1/2 hours, they often wake me up at night or I get them when I first wake up in the morning. They are very sensitive to alcohol (usually when I'm in a "cluster", but sometimes when I drink alcohol not in a cluster, it seems to start a cluster). And they are usually VERY painful. they often accompany a stuffy nose of the affected side, as well. however, when I went to a neurologist, he refused to agree that they were ch for several reasons:
1) because i was a girl (and that is why i instantly did not agree with him, and disliked him from that point on)
Moron!! (the doc not you) Look around
2) because the headaches were in no particular pattern (although I have since realized that I do have periods were I do not get headaches, usually this doesn't mean that the headaches stop altogether, they are just far reduced in degree and number) Not atypical in the reduction of frequency and intensity. Do you have periods of complete respite? or Year round?
3) they do not cause pupil dilation or droopy eyes Not everyone gets autonomic features all the time
4) they do not increase my blood pressure No clue on this one
Obviously, I disagreed with him and searched for somebody else that could help me.
I live in west virginia, and have seen several doctors, who I can suggest cluster headaches to and they will agree with me, but they do not know anything about treating them, and so have left me medication free and frustrated with the medical system. |
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Still sounds like clusters to me, but I'm not a doctor
Look here for recommended Docs in possibly your location or near:
http://www.clusterheadaches.org/doctors.htm
Though you may not be interested in Meds per se This is a great resource to know like the back of your hand...print it out and give it to the doc atleast you can educate them.
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!!
You will need a doctor even if you want an abortive with the least amount of side-effects. Oxygen should not only be requested but demanded from your doctor!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I have recently been using Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action= display;num=1120904753
If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Some tricks that I used to use and sometimes still do are:
*Wrapping a bandana tightly around my skull (be careful)
*Filling a sink with scaulding water creating a steam bath and placing my head over it with a towel covering
it.
*Going from Steam to Frigid shower.
*Standing infront of A/C
*Icepacks or frozen veggies on the back of the neck or eye
*Tons of STRONG coffee.
Best of luck!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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ATAC
New Board Newbie
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Re: Ice
« Reply #4 on: Aug 23rd, 2005, 3:29pm » |
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Thanks Eric, I will look into the info.
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floridian
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on Aug 23rd, 2005, 2:27pm, ATAC wrote:
1) because i was a girl (and that is why i instantly did not agree with him, and disliked him from that point on)
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Moron doctor. Find another neurologist, or a good GP that is willing to do ten minutes of research.
Read the diagnostic criteria: http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Diagnostic%2 0Criteria
You don't HAVE to have a droopy eyelid - it says one or more of the listed features.
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mcf69
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I am acutely aware of where my trigeminal nerve is
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Re: Ice
« Reply #6 on: Aug 23rd, 2005, 11:09pm » |
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I would deffinately find a good neurologist if I were you, instead of goofing around with the docs that you have. Print out some of the info the guys have provided you and bring it in with you, thats what I had to do.
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lionsound
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Re: Ice
« Reply #7 on: Aug 24th, 2005, 9:11pm » |
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on Aug 23rd, 2005, 2:27pm, ATAC wrote: however, when I went to a neurologist, he refused to agree that they were ch for several reasons:
1) because i was a girl (and that is why i instantly did not agree with him, and disliked him from that point on)
2) because the headaches were in no particular pattern (although I have since realized that I do have periods were I do not get headaches, usually this doesn't mean that the headaches stop altogether, they are just far reduced in degree and number)
3) they do not cause pupil dilation or droopy eyes
4) they do not increase my blood pressure
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wow!--The first two reasons you listed here are exactly why it took forever for me to get diagnosed correctly. Mine also get mixed in with my migraines too.
I have no idea if my pupil dialates..I've never checked that much becasue I hate the light when my head hurts... and my BP once was checked in the ER diuring an attack and it was low. My eye does tear a lot and I sneeze like crazy.
Everyone is a little different..variations on the theme.
Very glad you are a good advocate for yourself and getting to a doctor that you are comfortable with.
I hate meds too and right now I'm pregnant so I'm very limited. I DO use O2 and love it and recommend it highly!
Keep us posted on how you are doing.
Be well and PF!
-lionsound
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brainfreeze
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Re: Ice
« Reply #8 on: Aug 25th, 2005, 3:58pm » |
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Keep on doctor shopping until you can get one to accurately diagnose. It took me 2 years!! For some of the same reasons; i'm a girl and was chronic from the git go! This was in 1989 and they definitely didn't diagnose CH in women then. Find someone to take you seriously. It's tough. Sorry for the pain and the runaround. Good luck.
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Susan
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